tv Kathleen Sebelius Discusses End of Life Care CSPAN April 14, 2017 12:04pm-1:15pm EDT
this promptly, but we are not always being taped live by c-span. we are delighted to have them here today. this is a particularly exciting entry in our long-standing programs.lth the focus today is the inaugural report of the aspen health strategy group. the name come health strategy group, is taken from the aspen strategy group. for those of you familiar with american foreign-policy, you probably know about the aspen strategy group, the leading bipartisan group of its kind cannot looking at critical issues of foreign policy. and we established a health strategy group with that in mind, bringing together remarkable people from different sectors in the american health and medical landscape to look at the most pressing problems and to come together with different
perspectives to make recommendations for change. particular group is cochaired by former secretary of governor kathleen sebelius, who is with us today, and tommy thompson. the mission is to promote improvements in policy and practice by providing leadership and counsel and specific roadmaps when possible on the most critical issues we face. as you have seen, we have an extraordinary lineup. senior thought leaders from different sectors, including health, is, media, and aspenlogy, just as in the group on foreign policy. we recognize how important it is from different people from all aspects. the focus of the inaugural launch year was end of life
care. it is an incredibly difficult and complex issue. , butust medically socially, ethically, politically, economically. the report and are going to hear about today reflects what we think is some of the smartest and most sensitive people on this and normalcy difficult issue. you will hear more of these efforts from our panelists, but let me say how excited we are to see this new strategy group in the aspen firmament begin its work, actually leading to changes in policy. let me give you a heads-up, that the focus of this group at the summer at its meeting is going to be on the opioid problem, which of course is a national differentn myriad dimensions. i was going to say our moderator for today is the director of the aspen health strategy group.
all of you know him, as editor and chief of "health appears -- affairs." he has a personal issue that developed this warning that may make it unable for him to be here. if he comes through the door, there will be musical chairs, and if he does not, the director of the health medicine society program will do a terrific job moderating. and of course, i will leave it now to ruth to introduce our two panelists, kathleen sebelius, the cochair of the aspen strategy group, and dr. victor and, a member of the group, the president of the national academy of medicine, which was until recently known as the institute of medicine. one little housekeeping note. -- noted,dy did note
we are delighted to have c-span with us here today. so many other people will be able to hear what they have to importantly, hoping that those recommendations are going to beenan impact on what has one of the most intractable problems in american public health. let me turn it now over to ruth katz. elliott. thank you, back,lks standing in the we have some seats of front and over on the side, if you want to move up this way. and i think we are going to get more people floating in. thank you for being here. as elliott pointed out, i am not allen wile. he is dealing with an emergency situation with his family, so i am stepping in. hopefully he can join us in a little bit. let me tell you how we are going
to proceed. i'm going to do more introductions of our panelists today. i am going to take a little bit asking them questions, to discuss the report of the recommendations, but we want to leave time for you to ask questions. please have them ready, and we want to have an interactive session here today. let me introduce -- actually, both of these people need no introduction. that me just add a few words. to being in addition the former governor, former hhs secretary, she is an expert on health policy, health care reform, human service delivery, and executive leadership. she served as the secretary from 2000 14. she currently serves on numerous boards, and from 2003 2 2009 she was governor of kansas. during her career, kathleen has childhoods, early
initiatives, tobacco control, dental -- mental health care, and the list goes on. thank you, kathleen. is president of the national academy of medicine. most of us know it as the institute of medicine. he is the chancellor emeritus of duke university and former ceo of the duke university health system. he was professor and chairman of medicine at harvard school as well as stanford university. for those of you do not know, he has done work related to cardiovascular medicine that has led to widely used and life-saving drugs. thank you for joining us. other housekeeping thing. on your chairs we have xeroxed for you the five big ideas that came out of the aspen health group's report.
the full report we have given you the link, and the full report, the background papers that were prepared for this initiative, but what you have is the summary of the five take ideas this group came up with. at the conclusion of this meeting last june. before we get to that, kathleen, talk to us about the strategy were, how we did our work, and be will look to victor about the regulations. ms. sebelius: thank you for having us here today. thek you, more importantly, aspen health strategy group came k -- thee id of ruth idea of ruth katz. focused specifically on a whole range of health issues, and that became an and or as a popular forum. it was ruth who suggested that
maybe we have a health strategy group after what had been successfully done years ago any withnational policy arena the aspen strategy group, a bipartisan group of folks who talked about challenges and issues, not necessarily trying to writer drive every program, drive every program, but that approach. she approached me and governor thompson, and we have mirror backgrounds. we were both governors. when the medicaid programs ran, and both of us served as secretaries of hhs, one in a democratic, one in the republic administration. we seemed logical to be the of thisan cochairs effort moving forward. we looked around the country for various leaders who not
necessarily were focused on brought to a broad perspective from business. some are into the health business as leaders of big health systems or insurers, providers, and invited people to become part of this, not because of their expertise or knowledge of end-of-life care, but because of a broad background that they could bring to the table to look at challenges and issues. we talked a lot initially, the governor and i, about what kinds of topics we would try to focus not a decided it was great idea to try and locate what was hot in the legislative arena, the political arena, but come to this problem of what are the challenges and issues that did not lend themselves to specifically political
discussions or conversations, and needed a jumpstart or needed an additional conversation and push. i think i had a very personal aserest in and of life care, most of us do, if we have had ones and near and dear have gone through that experience. and also a policy interest. the deathremember, am penalty the come that became an illustration of just how electric this issue becomes when it comes in that government sphere and how difficult those conversations can be. interested not only in the policy side, but in the practical side. we decided the way we would operate a little bit differently than a lot of groups, was to engage experts over the course
of a year to really do a dive on various aspects of the topic. and then have a convening by telephone and once a year in person of our group to thany dive in, and rather producing a lengthy report that would sit on somebody's shelf, look at this as ideas. wellt seemed to fit in with the aspen theme. we came up with the notion that we would try to generate around a consensus a number of big ideas to put forward, not that people had not thought about them before. they did not have to be unique. but if you were only to do a handful of things, what would they look like in this area? what could move the conversation down the line? what were the challenges that we are facing, patients and
providers? so our first year was spent with and of life, as ruth said. report is now online, in front of us. one of the more interesting things, we looked around the table at the aspen and realized in addition to trying to generate some conversations with the outside world and the policy makers in washington and in the administration around these ideas, everyone in our group has some capacity to move these forward in his or her own organization. so one of the commit's was that individuals -- commitments was that individual members would turn around and do the initiatives in their organization. our membersone of who runs the cleveland clinic, realized in the clinic among his own employees there is no conversation about advanced directives, there is no generalized discussion in the hr whentment, for instance,
people fill out forms and decide they want to set aside money for this insurance or have this program or an ira -- no one talks about this issue. of for that to become part their routine hiring decisions, that this would be a conversation that they would urge their own members to do, and he is carrying forward on that, feeling if you are going to normalize this conversation, that is a great place to do it. also tapped into a lot of the expertise that was around the country and people who were already much engaged in the short when we can together. and one of the great opportunities was to look at the work victor was leading in the national academy on medicine. they were out have -- out ahead of our organization in organizing. seriesd went through a of convening's, had had a whole
host of national organizations lined up an onboard. and he is a member of the group that brought forth those ideas to the initial aspen strategy group membership. we feel like the work we ended up doing dovetails very well into victor's work. the way we will operate is i want to lay a bit of background and how we got here and what initiative pushes forward, and then will turn to victor who will cover some of the specifics and hopefully we can go back and forth. one thing you might want to mention terms of the work we did was the open invitation to the public for big ideas. this is unique to what this group is doing. ms. sebelius: in addition to our own membership, we felt that whether it was end-of-life care, any other kind of health or
policy challenge we might tackle in the future. and again, i may have said this, but the notion was to take one , not try to do a whole host of things, but really focus on one live, knowing a lot of people were involved in the process. part of this process, it has launched against four-year 2 -- for year two, and then invite everyone to send their own big ideas and ask our members to send it to their email list, to use the whole list, to get to the press and public, it is not just 23 members and chair people sitting around the table. it is we got hundreds of ideas submitted.
we had lots of input from lots of people. even in our inaugural effort, and we hope that that effort to do some out reach to the public -- outreach to the public and invite people to submit ideas and initiatives will be extremely beneficial. and those were all processed and pulled together, and part of the information that we looked at when became together, in fromion to very deep dives experts who were engaged to look at aspects of the topic. and that format seem to work well. we had very keen expertise. we had a lot have information and outreach to the public, and we had this membership to bring their own initiatives forward. some of the big ideas we got from the public were incorporated into the final set of big ideas that we came up with. as kathleen has pointed out. have got it up at the website
two.year for year victor, talk about where we ended up and how we got there and how we can help advance this issue. dr. dazu: let me say what a great choice of topic, and congratulations on the leadership that secretary , governor thompson, and yourself. this is such a personal issue. issues suchvery few as personal life work and of inness, and i bet everyone this room has some patriots with a loved one, a family member has gone through this. we can recognize this is a difficult topic. as you look at the size of this issue, particularly as we never gave the complexity of our health care in the social
environment, it will get bigger, because white -- right now we are dealing with 2.5 million americans die each year of as variety of causes. and you another eight million people are suffering from advanced issues -- illness, which is moving toward end-of-life. want to say young people die. they do. a -- iare dealing with guess you would call it the public health issue. i think it is a national priority because if you look at this issue, and the fact that difficult ity as is to do with this, but when you have to deal with the care aspect of this, most of you will say how fragmented, how difficult it is. so i think to me both a personal
issue, but also it is an issue that we as a nation needs to figure out how to make this much easier. we are becoming a very diverse country. myself being an immigrant born in china. you think about the different types of culture, religion, family structure. so we do not personalize it and make it person centered and homogenize it, you can imagine it will not work. a very important issue is to recognize this has to be personal, patient centered, family centered. and because how do most people want to die is starting to show that 60% would rather die at home. this is happening in this country is the question. i would argue that we have a system of care that has not to
our environment. thought 50 years ago, -- that is fine. looking at the way in which medicare looks at how to pay and support services, probably not that up to date, particularly with this population. so something has to give. and kathleen is the expert and i would love for her to tell you more about this, but we know that many care does not provide for social support. i have had that experience when had torly parent navigate the social services, the family services, caregiver, the time for activities of daily living.
that is one of the big problems he found in this report in looking at how difficult it is because we -- we found in this report in looking at how difficult it is. the coordination of care, which is so important. , alsoalso not there fragmented. we do not have enough providers who understand this issue from experts like palliative care, there are not enough of them, or every day. i am a doctor. i was never trained to talk to people about have you got planning and spend time doing this, and nor do we have enough time. you have to get the patient's and get them through -- patients and get them through in about 10 minutes. i have described use of the
problems we face. it is not just an issue of it difficult time for us personally, but we are not helping, we're not having the system support families. i think that is the issue. i think this is why a number of organizations, including the one i come from, and the aspen --lth strategy group, says because we all care about this. so i say what is unique about my experience with the aspen group 23 peopleere are with all different actress. everybody has personal experience. for them to bring in perspectives, whether business, health policy, ethics, etc. so together we are trying to solve the problem together. and leading up to this is this
call for idea from both sides. we spent a lot of work leading up to that meeting, and that meeting to me is really unbelievable. that we see the following -- we at the national academy do a lot of reports. we do it over a year in multiple meetings. this one is dynamic because you bring people in to say you are prepared to begin with him and the first day we asked people to tell their stories. i thought that was really good because it warms you up to say, what are we expecting from this? papers to we have talk about this background what we are talking about. say, whate primed to problems are we trying to solve? how can we make a difference? in the five big ideas is putting on the table the things we
think can make a difference. what about those big ideas? let me just read them to you. that,ll have them, i know on your chair. right?advanced planning, ask may be so bold, may i how many of you have advanced directives? good audience. ms. katz: very impressive. just because you knew you were on tv. in this country, about 25% of people have advanced directives. and if you look at certain populations, that is even much lower. that means people are not prepared. think about this. go -- get sick and you this is and of life -- and doctors are trying to decide what to do, with the advanced
directive they're compelled to give you everything they can do. maybe sometimes a necessary intervention. of someone a proxy who can coordinate a conversation. so the first recommendation is to say you have to have the advanced care planning integrated in the fabric of life. when you start thinking about to a most of us get certain age like me when we start thinking about this. but you cannot plan when you are going to live and die. you could be in a car accident. it shoulda is to say be part of your conversation all the time, right? we said if a young person at age 18 go and get a drivers license, is that not a good time to say, have you thought about this? so i think integrating the advanced care planning into the fabric of your life is really
important, because it is only going to help you. think about this. if you do not have that given the fact that we now have this care coordination problem, when your loved one gets sick, who do you call to make what decisions? guess what -- usually you say let's go to the emergency room. that is the fastest way. once you are in an emergency without a directive and without the team, you're not getting yourself into a sequence of care that actually may or may not be what your loved one desires. i would say that the other one that is reality -- really important -- and i will put them out of sequence because i want to leave the policy side for secretary sebelius to talk about -- is having the providers also thinking about this as well. nurses tog doctors, have every opportunity to talk to their patients and feel comfortable talking to their
patients. and importantly, having more providers understanding palliative care. doctors comeour primary care physicians, and what percent will go into this -- and 1% will go into this area. we leave both specialists and generalists to be able to talk comfortably. problem,, time is a expertise is a policy, so we need to change policy that will consent to five this, to have time to the -- to incentivize discuss have time to the planning, and educational issues. we need to make sure that people are trained to do that. ms. katz: you are going to talk to your former colleagues at duke? sure, i am.
it is time to mobilize people to say are you going to commit yourself to make a difference. what about education, etc.? and how can you really make these changes. it has got to be grassroots, it has got to be everybody wanting to change. being abled one is to measure whether your system that is caring for you is meeting those quality levels. we talk so much about quality, measuring quality, we do not do enough about saying what are to expect when you deal with end-of-life. --know people can at least are they could enough, are they measuring what areas they need to improve? then importantly is this medicare issues or insurance as a whole, private or public insurance. we need to make sure we change things, change things which hospice care has covered, and
kathleen will talk about what the medicare situation is. medicare advantage, you are not going to get those kinds of coverage. also in fact there is a policy of coordinated care and a care team that is for the patient, particularly when the enter the area of serious illness, and a coordinated care setting. an increasingly these days you , wehearing about changes want to make sure that is part of all those things because you want to be sure there is in fact care for hospice and others. finally, the fifth big idea is there are communities that are doing it right. there are models that are beginning to happen.
we see a lot where we look at cultural health and how communities are getting together to solve the problem. we need to support those initiatives. find ways to get resources and use them as models where other people can also follow them. those are the five big ideas. were -- we are waiting to talk to secretary sebelius about medicare, but i want to ask her, how can we make this happen? some are policy issues. the waye to go all through congress, because after all, social services, medicare services, they come from different branches of the agencies. how do you make sure it is all integrated? i will say one last thing. ms. katz: go ahead. dr. dzau: we did a recent analysis looking at the amount of money we spent on medical care. we all know we are the most expensive country in the world, right?
but if you look at medical care -- social care, we are a lot of countries spend money on social care. that reduces the need for medical care, so the cost of care is so huge. i think we have it backwards sometimes. we need to keep people in the community healthy, give them services they need. good segue from victor, and i might drill down on this revelation about medicare and turn it back over. y for often drives decisions that people have to make. if only one thing is paid for -- and in this situation 50 years when medicare was written into law, it did not have a drug
program, and it had no really social support system built around it, and medicare does not pay for long-term care. so you combine those three this innd you combine today's environment where we do not have end-of-life described as a finite activity any longer, even the weight it used to be 15 years ago, -- the way it used to be 15 years ago, when doctors had to say you are within six end-of-life, two doctors had to say this, and the benefit is opened up. as people declined with multiple chronic illnesses, they get more dependent on care, but not necessarily wanting, meeting, or desiring hospitalized care. but they are in a difficult
situation, and the families are in a difficult situation because that is what is paid for. but we pay for not only drives cost, but often puts people in possible choice situation. what medicare is missing is a whole set of social benefits that could wrap around care delivered at home, whether it is respice care for families, where it is for a person who wants to stay in place but need activity of daily living help, not in a nursing home, but actually in a home situation, or needs to be in a more conducive home situation. that getse way that -- the only way that gets done is actually through congress. congress has to add benefit.
this is one of the ideas that has to move through congress. given the population and given the fact that we now have a lot who are aging, 11,000 people a day becoming medicare eligible, the grassroots support for this kind of initiative could be very powerful. and the same way that medicare desperately needed a drug program, which got added to the medicare package. it was not part of the original package. you would never write a medicare law today without paper just -- a prescription drug portion of it, without a portion of care dedicated people who are growing more dependent, but do not want, need, or desire hospital-based care. one of the things we talked about, and the health care providers were a part of this,
was these decisions should not necessarily be driven by the medical personnel. they should be a part of the conversation. they really need to be patient centered, family centered the decisions that include medical systems but are not necessarily designed by a medical system, because that is care that most people do not want or need at some point, and that balance is difficult. i would say that the medicare is boththat is missing to coordinate the care team, and often it is not only the physician, but a nurse practitioner or even a home health nurse who becomes the front line of that, incorporating in a hospice benefit that has lots of additional benefits, but also some practical home health assistance. so it is coordination of care, but also paying for social supports that are missing
entirely from a medicare package. you can go into a hospital, then skilled nursing, and a hospital, and all that is paid for, and very expensive, and often what people do not want. but nothing else is paid for unless you do it out of pocket, 2nd it becomes a catch 2 for two many families -- too many families. that became the focus of our conversation. ms. katz: i think it is terrific issue that yout touched on is the one that has to do with money. i bring that up because one of the things that made this group and the way they approached it so unique was we did not start with the question, which i think we usually do with end-of-life care, it costs too much, what do
we need to do to reduce costs? we began with the question, what does it mean to die with dignity in this country? eventually you get to what it costs to make that happen, but the initial question was, what does it mean to die with dignity in this country? and to evolve to the question, what does it cost? dr. dzau: i argue we do the right thing because the cost will go down. because lots of studies show use hospice, if you care at the right time, you will reduce the use of emergency rooms and all those things, and people have varied -- better quality of life. care, theout social same. if you give more social services, the quality of life increases. do do not say every time, i not know what to do, i go to the emergency room. i think this is brilliant in
terms of approaching the right way, what is the right thing to do, and guess what --the right thing will follow. ms. katz: exactly. so you were consistent with what we did. we started with that issue but got to these other ports. before i targeted the audience to ask questions, kathleen, i want to give you the opportunity and this relates to victor's point of having the discussion with the right people at the right time -- tell us what death panels are really all about. i was a staff person on death panels so -- [laughter] ms. katz: entity -- ms. sebelius: at the beginning -- and mike is here it is -- is here. it is tattooed on his arm somewhere. part of the conversation around the affordable care act with what should be done with medicare and medicaid in terms programs those
updated. that very simple idea was in the payment code right now for medicare, there is no payment that a doctor can receive for having a conversation with a patient about and of life. of life.-- end and we thought that was appropriate for physicians to spend that time with their patients and pay doctors for their time, and they could allocate time to do that. that payment code became the death panel idea, that somehow doctors were going to force patients to sign an advance directive, and, therefore, they would end up rationing care and that would be the end of the patient. it took six years. i'm happy to say that the
medicare benefits -- the medicare code now includes a payment for doctors to have a conversation, that it took six years to do that, so that we could added to the administrative decision-making. but it was an example of that, and it is one of the things that informs and inspires me -- this conversation cannot start in government and should not, because it will always be about , asserted bye someone who will always be about limiting care, will always be about government reach in and doing something. it has to be inspired by communities and faith leaders and providers and patients, demanding that the system change, because there is no question that our health system, which has made incredible advances and drugs and their bees that keep people alive for amazing.
periods of time does not match with the payment supports that patients can rely on. that peopletch 22 find themselves in, particularly in this difficult time. i was inspired by personal situations. i had a mother who ended up spending up the last of her life in three hospitals and 100 procedures. she was tortured to death with provider saying we can solve this and something else would go awry. my father 15 years later, having lived through that experience, was able to do a very different thing, ended up being able to die at home with hospice care, and that is exactly what he wanted, but looking at those situations, it gave me the y in and the yang of the
puzzle. dr. dzau: i think the message we can give is get involved. i think it is brilliant that aspen got together the 23 people from the different sectors. , when i was examples at do, let's make sure that doctors and nurses engage in discussions with her patients, and also as a patient gets admitted, comes for surgery, asked the question, what is the best place to care for that person? hospice, they got an early, not late. education. so clearly now we need to put that in the curriculum and put that into part of what people are to learn.
we heard secretary sebelius say we had a report in 2014, and it dovetail beautifully in this. really common ideas, and this is what takes it to the last -- next level. we are committed to make sure we take it to the public and keep it moving. the questions being asked, what are the 23 people at the table, what are you each doing? so we have been working for the last now almost three years to take our report forward into communities. -- and created which people come together saying, how do you actually talk about this, how do you move this issue forward? we had this meeting, which was called a summit. we got a thousand people there.
and i asked ahead of time people to make a pledge, people who run large organizations, like a college of surgeons, family of medicine, to write me a plate of what you would do in the next year, and they did. some are education, some are changing the way they do things, and you attended that meeting to discuss where are we moving forward. 30massachusetts, organizations came together as a coalition. that influences the state policy, but i think helping each other to move forward. my feeling, my message to you is we need to work together as we do our share and using our ability and organizations to keep moving forward, it is important for you to get engaged, and that is what we are talking about that can change. to ap committed two years
roundtable that continues this work, so we are convening patient groups, community groups, and we keep talking about what we need to do and keep pushing forward this initiative. ms. katz: let's hear from this community right now. yes. two short questions. this compassionate -- is compassionate choice part of your model? and how are you current -- your immunities working? on sebelius: the folks compassionate choice are not necessarily members of the committee. they were not chosen for that topic specifically, but they have informed a number of ideas. largere part of victor's panel, and they are driving initiatives all over the country. but they certainly have been informed -- informing our group, and a lot of what they have
stood for is incorporated into a lot of the decision-making. we have an inclusive way of approaching this. when we had that meeting, many organizations, including compassionate groups and others have attended the meeting and engage in this discussion. we have an ongoing connection with multiple community groups and organizations that in fact talk about and work on this issue. when we go out to communities, i asked them to help them -- us reach our communities get together. , and have aizens conversation and help move forward the agenda. in the model community area, there are different places, and it looks like different things. thereare some areas where are retirement villages that have taken on these topics as a
way to engage their own members. the luzern health system -- the system, when you come into that system at any point in having a baby, breaking to fill, you're asked out a medical director. you are asked to update it on a regular basis. ofy end up with about 1/5 the end-of-life days in the hospital of any other system of its size, so there are lots of different models. some are community based around faith leaders and community leaders. some are space based, where people are living in a community together, but part of what they are doing is exchanging information. we are saying if this conversation is grassroots, we need to help highlight those
ideas, share those ideas, and have a place where people can exchange them. ms. katz: yes. if you wait for the microphone. tell us who you are. with a foundation, but i also work at montgomery houseless -- hospice. my question really is about the training of doctors. gotyou did not say you trained in that area, and that is a big deficit. so who is doing it right now? dr. dzau: that is a very good question. it is highly variable. but i do believe organizations ,uch as the american college the american medical colleges, and recently the postgraduate
education, those are thenizations that oversee quality of performance of training programs. so they had the ability to say this is required as part of your curriculum in order for you to at accredited for being training program. i think there is a long conversation introducing those kinds of things into the curriculum. and when you start doing that and use good models of what the thateducation module is, will be successful. there are efforts moving forward in trying to go that way. ms. katz: there is a lot of research going on. -- ms. sebelius: there is a lot of research going on. there is a growing recognition in the medical community. -- as a cancere doctor he and colleagues are
doing research on what kinds of -- how doctors can have conversations that actually do with their patients about what kinds of questions you would ask a patient and family that they understand what their decision range is. and they are testing them right now as we speak with seriously and terminally ill patients because he said it was his own failing. his language do not match what people wanted. they could not hear what he was saying. they did not know with their choices were. they're trying to figure this out. but i think that is going on in a variety of arenas right now, but i'm not sure anybody we would say is the gold standard. a very important point, is you have to know what you want to teach and how to teach it, and that is when you talk about that. that is still a work in progress. ms. katz: you should take a look
at our full report, one of the background papers. a tremendous amount of work has in this area. -- a lot of what is in the paper goes specifically to this issue of we are not training enough people how we need to do it. ms. sebelius: and part of what diane has captured, they had no idea how to have this conversation. part of the baseline is they admit they were never trained -- ms. katz: which was toby's point. when we met, he talked to the physicians at his institution. how could he expect his people at his institution when they have not acted on it themselves? other questions. we will go back and forth. >> i think this is fabulous work. my name is patti webster.
there is intermittent amount of energy and expectation around the u.s. about this work. and a lot of groups are doing wonderful things. have you thought away of how to have a collective learning system where groups doing bits and pieces learn from each other with multiple layers, what is working and what is not, and how do we measure the number of people who are having a conversation at their table, how do you measure the collective impact, because it is a tremendous bubbling? dr. dzau: yes. , taking on,t we do convening people to learn from each other and to move forward with collective collaboration. right now working on a big one on condition, well-being, the suicide issue. we have 50 organizations coming
together to share data. we are going to have a knowledge hub. this field requires the same kind of activity. you have just given us a reason to move forward on many of those ideas. ms. katz: yes. a counsel.a i want to refer to your first big idea. you make a point that 70% of people prefer to die at home, and when you have this discussion, as i did with my own mother this past year, any people want to do hospice care. -- of the incredible things my mother was very well informed and i work in health care policy issues. we had no idea what was and what is not covered. when the hospice people came and she agreed to do hospice care, it sounded like everything is
fine, you sign on the dotted line. then we suddenly found you're going to need 547 coverage because you're having falls. or if you want inpatient care that is going to cost extra. it might be a good idea if the hospices themselves were required to tell people what exactly is covered and is not, and in turn that would generate consumer demand, constituent demand on congress to start asking for a better hospice care program. i wonder if you would comment on that. ms. katz: kathleen, you want to come in. ms. sebelius: that was an excellent point. there was some updating of the hospice benefit in the last administration, but not nearly enough. again, what you are talking about -- and i have seen this reaction myself -- for a number of people, the reluctance to be involved in hospice, because hospice translates to a lot of people that is his death.
or a patient offices consumer says, i am not ready for that. so we find lots of people use the services as limited as they late. too they may have benefited by a lot longer stream of care, but also missing are the social support about, which few people in their own situations, allow people not to choose to be in a nursing >> i think a clear definition of what is covered and what is not have no most people idea that medicare doesn't pay for long-term care. none. thisospice is a piece of but i think you are right. more explanation of what is and isn't covered would generate demand in conversation of what
it would look like in the 20% rate. great idea. >> where time for a couple more. in the back. >> jane tilly with the administration for community living. if the folks could talk a little bit about how disabilities have or have not been involved in the discussion, in the past or in going forward. >> one of the things that was done, in the prior administration, was a combination of forces that's recognized that even though the constituencies are different, that aging community and the disability community have many of the same challenges. house, housen, needs. if they were in some sort of
combined administrative structure, it's might help drive money to unify those support systems at the local level. it would serve both constituencies, if you had transportation, same with housing. it's actually the renamed old agency onaging and disabilities, combined into an number of the group looking at how you age in place and live and work in the least restrictive environment for the disabled community. their needs are very similar. if you drive that down to the , and let local communities phone the gaps, like, do we have limitation on
one area. do we have transportation that says they people up in wheelchairs, or getting out and about. that is another possibility. i think the most important part is how to support what everyone wants. hasdisability community been very much a part of the conversation about the support system needed. >> we have time for one more. yes? don taylor from duke university. i was wondering if you could reflect on the class provisions in and out of aca. what's next? had we get back to that conversation? >> another one of our favorites.
[laughter] it was an initiative that's senator edward kennedy worked out for years. that individuals should be able to set aside funding out of a paycheck or out of their own support system, and then pay for a variety of services needed in the home. it was particularly driven by the disability community. recognizing their choices are very restrictive based on what they can have for support. i think it is fair to say that teddy kennedy helped to write it as a new entitlement. he thinks it should be part of the program. when it was added to the affordable care act, the restrictions placed around the
program was that, as secretary, i had to certify that the program would be financially solvent and not drawing any government funds before i could certify a class act to move forward. it was an impossible situation because we knew it was not ever going to be self supported. if you had people that weren't in the workforce and could set aside a limited amount of downng, they would draw more funding, quickly, then they were putting in. i had to, eventually, go back to congress and say we will not start the class program. it still exists, it's in the law, the framework is there, but the certification had to be that soundnot yet actuarially as a self-supporting program. you can draw on government funds
and i think it is a framework that could work well, but the need is very much still there. care, healthhome care, is provideby health members -- family members. some of them can afford to do that, others cannot. we have lots of people that have to quit their jobs, or people end up depleting their resources and ending up in a nursing home because medicaid nursing home is mandatory. the discretionary side is home health and states could very that. we still have a huge need, it didn't go away. -- framework is still in the affordable care act but it has not started because what was added at the end of the day, had to be actually are -- actuarially certified. it can't run the way it is written.
it has not yet gone away. time, iarted on promised we would finish on time. we are a few minutes late. before i let everybody go, there is one more piece of paper on your chairs. for those of you that are regular attendees of various programs, i want to highlight that we have, on may 5, a book and that we are cohosting elizabeth rosenthal on how health care became big business and how you can take it back. and wesign up online would be delighted to have you here. we thank you. the sure to take a look at the full report. eager to get ideas for our next project on opioids. i think kathleen and victor. [applause] -- i thank kathleen and victor.